Posts Tagged ‘asd’

Imperfect Parenting

Posted on: May 13th, 2020 by Jessie Topalov

Over the last month, I’ve written about my own personal journey during COVID to shine a light on fear. This week, in honor of Mother’s Day, I’d like to write about parenting during COVID. Personally, I’ve gone through highs and lows. Some days, I’m so grateful and proud. Other days it’s a completely different story. Through all of it, I’m learning to love myself and my boys in the midst of imperfection.

Intentional Parenting

Prior to COVID, I liked to think of myself as an intentional mama. I made a lot of calculated decisions about how I wanted to raise my boys and had some pretty high expectations of myself. I’ve shared before that when I had Henry I suffered from postpartum depression. As a trauma survivor, I had an added layer of not wanting to do anything to harm my child. Not harming my children in a physical way, I don’t worry about that, but in not wanting to make a mistake. From there I spent the better part of 18 months being 100% attentive to Henry when he was with me.

I mean, I was that Mom we all hate. Calculated floor time, zero TV, homemade meals every night, cloth diapers, no electronic toys. I was perfectly happy doing all of this but I didn’t do anything except this. I gained being a mama in my heart and at the cost of myself (a bit). Enter Declan (my second boy) and keeping up at this pace was just not achievable at the same rate. I went through an angry phase, being angry at myself for not being able to keep it up. Then I realized while I could love all the different ways I could parent my children, the most important was having a full heart. That I needed to find time for Jessie and not just the mama in me. I’ve quoted it many times but truly, “How Not to Lose Your Shit with Your Kid,” changed me.

Changing Your Parenting Style

After I realized I couldn’t keep up the same pace of my “perfect parenting,” and with two children under 2, I gave myself a hell of a lot of grace. I let myself fail, break my own rules, and most importantly spent time taking care of myself too. I was able to keep the things that were important to me for Henry and Declan. This looked like eating whole foods, limited TV time (none for Declan he was not yet 1), being present when I was with them, and allowing myself some alone time when we were home together. This felt good. Really good. Enter Shelter in Place. Without my village, it all fell down.

I had gotten into this groove with my children because I allowed myself access to support. I made sure I didn’t expect myself to be with my children 110% of the time. My children went to who I consider their second mom’s house (Dana!) three days a week. Martin and I were rocking date nights at least every other week. I was going to the gym. I was regularly cooking at home (while still appreciating occasional restaurants). I was balanced. I was happy with myself, my parenting, and so grateful for our new son Dametrius finally coming home. Then, overnight, it was just our family and our responsibilities increased as a family increased exponentially.

I’m pretty lucky in the sense I had already laid the foundation with myself that it was OK not to be perfect as a parent. That to be a mama didn’t mean to be on point every second of the day. But a big piece of this was letting myself have some alone time. With sheltering in place, alone time is SO much harder to achieve. My husband works 40 hours a week from home with little relief from his work to help with childcare. Owning my own company means I have to be the flexible one with fitting my work schedule around the kids. It also meant I’m with our boys way more than my husband. I’m learning how to teach our new 8th grader. Dametrius just moved into his new home, so I had no idea what he knew academically.

Add my own hippie heart of loving organic foods (but not able to go to the store), limited technology, and being present to everything else and you’ll realize this was a tall order!

So I did something radical. I’m serious, this was big for me. I threw away my script. Seriously! I decided that the most important thing was something I already knew after healing from postpartum depression and parenting two very young children. It’s love. That’s it. Love is all my children need to grow and thrive.

Realizing What’s Important as a Parent

Don’t get me wrong. There are still things that are very important to me as a woman and mama. But if I kept up with my pre-COVID rulebook I was going to crash and burn. Honestly, looking back, I don’t know how I wasn’t crashing and burning anyways! Sure, I had help, but my expectations were sky-high. So now I expect failure from myself and my kids on a daily basis. We fail, we cry, we kiss, and we move on.

I still want my children to eat well but, honest to God, cooked my first boxed mac and cheese for them ever. I still want them to play in the dirt more than behind a screen but we have movie night every night. I still want to be present with my kids but I allow myself to check emails on my phone while drinking coffee each morning. Some days we have free days. This means jammies all day, movie mornings, coffee, and picking up a toy or something small in a pickup order. I’m resting for myself, eating as well as I can, and moving or getting any exercise when I have a few minutes for self-care. When I can’t do these things I give my heart a big hug.

Mostly, I’ve realized that while my village made my pace possible it wasn’t what my heart wanted. Being home with my children for this amount of time has taught me to follow their needs and my own together. I’m not the mama I was before COVID. I’m messier, louder, and I cry a little more. But you know what? In accepting imperfection I’m happier too. I hope through reading this that perhaps you can love your imperfections in parenting too. And hey, maybe you’ll become a bit closer to your authentic self.

Xoxo,
Jessie

A Telehealth Heart to Heart

Posted on: April 8th, 2020 by Jessie Topalov

Over the last several weeks, our country and world have changed more than I believe we ever imagined. Each person and business has had to rethink what our new “normal” looks like because of COVID-19. For the autism community and ABA (applied behavior analysis) providers, one aspect of our new normal is telehealth.

I can say with confidence that very few BCBA’s or ABA providers were savvy to telehealth prior to COVID-19. Telehealth was used on a very small scale in regions that are remote and therefore barren of service providers. Outside of these outliers, we are a face to face field. So what do we do with this new service delivery model? How can we as service providers use telehealth for ABA to help our clients and their families get as much access to care as possible during COVID-19? At Instructional ABA Consultants (IABA) we’re approaching this in a few different ways. I also think from a mom’s perspective there are several aspects I would personally consider if it were my child. I’d like to share both.

Telehealth at IABA Consultants

Photo of an ABA therapist telehealth providerTo start, at IABA we first had to consider the clinical standards we want to see for all of our clients. It’s one of our core values that clients make progress every week. In eight years of business, I know this piece has always been true for us. Our data speaks volumes. With COVID-19 I knew as the owner I was willing to approve new policies to support our families so long as this value held true. I hold a great deal of trust in our team of directors and followed their guidance to ensure clinical quality.

Now please remember that we are essential workers and many of our clients are receiving direct care with supervision via telehealth. The reason for all supervision being by telehealth is to decrease the number of people gathering (#socialdistancing). There is a portion of our clients whose families are choosing not to have ABA providers in the home during Shelter in Place. For these families, we created three options for telehealth to address the variety of clients we serve.

Telehealth Options at IABA Consultants

The first option is for our clients who can independently respond (understand conversation through technology). In this option, we are doing direct telehealth sessions with them. This option allows clients to get the same content of their ABA session over video sessions.

The second option for our clients who can learn via telehealth, but cannot respond independently, is to require a moderator (family member) to assist during telehealth sessions. During telehealth sessions with a moderator, the ABA therapist will send over data sheets & materials prior to the session then coach the moderator on how to run goals.

The third and final option is for clients whose families are either not opting into any type of direct session (one on one goal work) either in person or via telehealth. This option is also available for clients who BCBAs do not feel their programming is appropriate for telehealth (remember our value of progress!). This third option consists of weekly or bi-weekly parent training sessions. During these parent training sessions the BCBA reviews goals, provides materials, datasheets, and trains the parents on their child’s ABA programming.

All of these options provide a spectrum of care for our clients. With ABA therapy we know that the amount of hours impacts learning and behavior reduction. One sacrifice that is made via telehealth is that hours are reduced so the speed of progress will slow. However, the benefit here is that for all families who are opting out of ABA therapy in the home, but into telehealth, progress will not stall and their child will not significantly regress.

I like to think of telehealth options as a good fitness program. When you are able to go to the gym and get goals from your trainer you will most likely make steady progress toward your goal. If the gym is not available and you’re now jogging outside you’re still making progress, but it’s not as fine-tuned as the gym. It’s progress, as you stay fit, but maybe you lose 2lbs instead of 5lbs this month. Telehealth tailored to our clients is like a really good jog and I’m beyond grateful for the response of the insurance providers to make this an option.

Telehealth from a Mom’s Perspective

Now, as promised, I want to take a moment to talk about telehealth as a mama. If my children were receiving this service I know that there are two things that would be important to me. The first piece I would want is for the telehealth session not to act as a babysitter. I would want my child to be actively learning not sitting and zoning. I can turn my own TV on. To monitor for this I would make sure the BCBA on the case was overlapping these sessions (also remotely), updating data, and providing weekly summaries of learning.

The second piece I would be mindful of is how much time my child is spending with the telehealth option. As I said above, ABA therapy improves outcomes based on the amount of time a child receives therapy each week. I don’t think this is true for telehealth. I would be wary as a mama if my service provider still wanted to do 40 hours of ABA via telehealth. At IABA we’re looking at between 30 minutes to an hour at a time based on the learner. These can be multiple times per day but eliminates the worry of just keeping a screen on all day with no progress. If both of these pieces (progress & length) were monitored for my child I would feel at ease with telehealth as a short term solution.

I hope the way IABA is approaching telehealth and my views as a mama serve you. We’re all in this together and together we’ll all be stronger for it.

Xoxo,
Jessie

A Simple Autism Support Guide

Posted on: March 25th, 2020 by Jessie Topalov

Over the course of the past week, our lives have changed rapidly. Here in Illinois, as in many states, we are formally following Shelter in Place. ABA therapy is medically necessary for children with autism and ABA therapists are categorized as essential workers. That being said, we gave our families and staff the option to pause services or work until the Shelter in Place lifts on April 7th in Illinois. We gave the same option to our Colorado families. There are still families receiving services and staff working, but we have more families currently on pause than those continuing with ABA therapy (as a personal choice). As a clinician and mama who is now going on week 2 home with my own children, I know how hard it can be. This week I’d like to provide some insight on simple tips for children with autism who are at home without their usual support team.

photo of mom journalingTip #1: Make a Daily Routine

I know that this tip sounds simple. I’ve even seen this tip on several parenting sites not specifically meant for children with autism. Having a daily routine during a time when life feels uncertain can be comforting. It’s also an easy way to ensure you are doing what’s important for you and your children every day.

For children with autism, routine has been, and will be, important beyond the COVID-19 outbreak. People who have autism often think in patterns and sequences. Life itself is one big pattern! To a person with autism, knowing what comes next can bring down anxiety levels. If anxiety is low, problem behaviors surrounding a change in the routine (the next task on the schedule) are less likely. The more predictable you can make each day for your child with autism, the calmer they are most likely to feel.

Tip #2: Single Task

I’ve mentioned this before, but in “How Not to Lose Your Shit with Your Kids,” single tasking is brought up A LOT. Maybe after COVID-19 the book will be a New York Times best seller! Just kidding. But in all seriousness, if, while you are implementing your child’s (or children’s) daily schedule, you are trying to multitask you are setting yourself up for failure. Single tasking is just what it sounds like. Do one thing at a time.

With millions of us now working from home, while our littles are there as well, I know what a large feat this is. You are trying to work and keep your children happy, which is multitasking in itself!

How I’ve personally tackled this is by setting up my children’s schedule (minus naps & food) around my day. What this can look like is taking breaks from work to transition your children through their schedule. It may look like cutting yourself some slack and when you really need to work. Things like putting a movie on or setting up play time that you don’t need to be involved in may seem like sub optimal parenting. While I know the mom guilt can be real, knowing our own boundaries makes for a calmer house. Do one thing at a time the best you can to keep your nervous system at bay. If you do lose your shit, go ahead and give yourself a great big mental hug. It’s OK, we’re all struggling.

Tip #3: Choose Small Goals

I learned this tip working with children with autism well over a decade ago. I was working with a boy with autism back in Ohio and he had a goal to learn to shower independently. In order to learn the full task of showering we broke the skill of showering into small steps. The goal was broken down into steps like taking clothes off, turning on the water, checking the temperature, and so on so forth. The whole process was over 25 steps! We taught one step at time and, in time, he learned to shower by himself. In ABA we do this for all our clients in their programming.

While you’re home with your child with autism, pick a few goals that are really important to you–ones that will bring pride or joy to your child. These goals can be new communication (pick 2-3 words/signs, communication cards), play goals with siblings, play goals alone, eating goals, or self care. Think about things you’d like your child to be able to do. Observe your child and write down all the steps they would need to know in order to accomplish the full goal. From there, you’ll pick the first step of the goal. Teach, teach, teach until that first step is learned. After you see success on the first step, move to the next. You may not get to the full goal by the end of Shelter in Place but your child will be learning!

Comment on our Facebook post your questions about goals and we’ll reply!

Tip #4: Celebrate Success

It’s so easy to become frustrated with each other during Shelter in Place. I mean, we’ve all seen the Shining… Staying in place can be filled with wonderful family moments, as well as some pretty real human moments. To help your child with autism know what they are doing well, make it a point to praise them! Try to find 10 positives a day to praise your child. Knowing that they are doing something correctly gives your child the confidence to continue their positive behaviors. And hey, while you’re at it, maybe thank your husband or wife for dumping clothes in the hamper not the floor.

Tip #5: Remember Functions of Behavior

Over the course of the winter, I wrote about the functions of behavior. I explained how everything happens for a reason and how in ABA we use four categories to explain why behavior happens. These categories are attention, escape, access to tangibles/activities, and automatic. During your time at home with your child, if a problem behavior occurs start to observe it the best you can to find the function. Here’s a quick guide:

  • Attention: Parent is busy-problem behavior occurs, parent provides either positive or negative attention
  • Escape: Parent requests-behavior occurs, parent removes demand
  • Access: Child requests an item or activity-behavior occurs, parent gives access
  • Automatic: this one is complicated, please reference my previous blog here

Once you notice what your child wants with their tantrums or problem behavior, it’s important to do two things. First, try to be preventative and fill them up with what they want before the behavior occurs, when feasible (for escape this is lots of breaks/attention & access is self-explainable). Then, if the problem behavior still occurs, do not give your child the consequence they are seeking. You don’t want to reinforce bad behavior. Stay consistent and sooner, rather than later, your child will realize the behavior isn’t working and it will go down. Also, remember to teach language skills to help your child request their needs more safely!

Tip #6: Give Yourself a Break

Life is disrupted for pretty much everyone right now. It’s easy to start your day with a plan only to have that plan change–sometimes only minutes into the day! It could be from work, your child’s particular mood at the moment, or that you yourself are just having a bad day. Try hard not to judge yourself and instead provide grace. Say kind things to yourself when you’re struggling and make sure you’re carving breaks out for yourself. These should be things you love to do. Mine look like naps, a kid-free hour, and running. If I’m overwhelmed I look to when I can schedule a me moment in. I hope you can too.

Xoxo,
Jessie

ABC’s & 123’s Don’t Really Matter Much to Me

Posted on: March 11th, 2020 by Jessie Topalov

Over the last few weeks, I’ve been sharing some of my favorite parenting practices, practices that I believe have a direct impact on positive development. In writing these blogs, I’ve been getting a lot of questions about my take on academics and young children. In a world that has growing expectations concerning what children should know, I’m more than happy to write my spin. That being said, I have to admit that my opinion on this topic stems from my grandma.

As a child, family was really important to my dad (it still is). He made a point to see his parents and to keep us connected with our aunts, uncles, and cousins. One way he kept my sister and I connected with my grandparents, who lived on a farm about an hour away, was to leave us with them for a week every summer. This was my favorite week of the year!

During the week on the farm, we would help take care of the animals (well, mostly me!) garden (again, me ) and learn to sew (mostly my sister). We got this amazing exposure to a slower pace of life and to learn about my grandparents’ take on the world.

My Grandma Virginia was the matriarch of the family and a force to be reckoned with. There was really only one opinion that mattered: hers. I loved her. Originally my grandma went to college to become a teacher but met my widowed grandpa who had two small children. Her life quickly changed when they wed. They had four more children of their own and she spent her years raising them while my grandpa worked as a traveling minister. When all her children were grown (all 6!) she went back to get her master’s in special education, which was right around the time I was born. She then went on to teach 6th grade and special education.

Learning About Education

In talking to me about children and education, there was something my grandma said to me that has always stayed with me. She told me that when she went back to college she was amazed by how many new theories had been created and how expectations had changed yet children were still just children. To her, this new world of education was based on adults wanting to “make a system better based on their own take,” versus really just following a child. She was concerned about the new level of academic work being pushed at a kindergarten level that then, of course, lead to the age of standardized testing.

Now, mind you, I was born in 1987, which was the year my grandma got her master’s. It was most likely the mid-90’s when she shared this opinion with me. But sitting here this morning, writing this to all of you, I can’t help but feel she was onto something.

I’ve now sat across the table from hundreds of parents with children who have autism and are worried that their young children are behind academically. In speaking to these parents, I have learned they are concerned with things like their children being unable to sit in a group, or solo, for a long period of time, not knowing shapes, colors or ABC’s, and not being able to read by kindergarten. I also know my mom-friends of young neurotypical children have the same concerns. These parents want to make sure their children are set up to be successful at school. This is a great goal, but, if you ask me, the academics really don’t matter in early childhood. Here’s why.

Childhood Development: More than Academics

To me, in regards to education, I have one skillset to emphasize to my children before they go to school; love to learn. That’s it. As I’ve written about before, children are naturally curious and ready to take on their world every single day. This thirst is what will drive them to learn just about anything we ask of them later in life. At an early age, forcing rote memorization of facts (colors, numbers, letters, shapes) doesn’t match the level of curiosity children have; it confines them to a small space versus the world. In doing table time work with small children, we’re teaching them to follow a rule (sit/see/do) versus teaching them to learn. Please don’t get me wrong; sitting at a table and doing work is super important as a child gets older but up until age 5 or so I really don’t see a benefit.

When a child is little I want to see them sit to eat, read books, play, and with family around 5 to 10 minutes at a time. Going potty is also a time to sit. If a child can sit through these social scenarios and understand the expectation, awesome! I really don’t expect more than that before age 5. The reason for this is children are natural movers! They learn through exploration and don’t have an attention span longer than their age. Asking a child under 5 years old to sit and “do homework” is really just an expectation of the institution versus something developmentally appropriate. Now, I know A LOT of educators might read this and not agree; that’s OK, that’s your right. I can tell you, however, that by working in a preschool with young children with autism and by watching my own children that I strongly believe in what I’m saying.

Children learn in their world. If we, as educators, parents, and therapists, begin forcing academic behavior and content before a child shows interest (between the ages of infancy to 6 years) then I do not believe we’re helping them get ahead. What I have seen as a huge benefit in development working with young children with autism and my own children is to just follow their interests. This means play, play, play or read, read, read! And if there are opportunities to teach during moments of play or reading? Go for it! It’s totally OK to ask for letters, shapes, colors and so on while playing or reading. By doing this, we’re teaching children that learning is exciting and to love to learn! There’s no pressure in this way of instruction and children learn to seek out this type of interaction. It reinforces curiosity & learning. This is what I want for my children and, more so, what I would want for a child with autism.

Encouraging Childhood Curiosity

If children are curious about adult interactions and finding new interactions within their world, the rest (like academics) will come. Really! For children with autism, learning the value of social interaction is a key component of their treatment in ABA (applied behavior analysis) therapy. What I don’t want to see in a young child with autism before the age of 4 is being brought to a table to learn and memorize information as the primary part of their therapy. I want to see them working with their therapists through play with only a small part of therapy reserved for focus and tabletop work. In my children and other neurotypical children, I don’t see any value in tabletop work before age 5 unless a child initiates it.

Children are magically curious, with an appetite to know more each and every day. What my grandma noticed when she returned to college all those years later was an increase in the expectations from institutions yet no change in the child. In her words, “we don’t need to reinvent education.” It’s been some time since my years on the farm and my grandma has since passed on but today I feel close to her and in complete agreement. Let them be little, let them be wild, let them be a little wild!

Xoxo,
Jessie

Tolerating Tantrums and Why Self Care is so Important

Posted on: November 21st, 2019 by Jessie Topalov

Last week I told you I could write for days about why I started my work. Don’t worry—today isn’t that day—but I do want to talk about a related topic.

A large part of my clinical work history was spent reducing problem behaviors while I was working on a crisis team in Illinois. I spent around three years working with both children and adults who had some of the most severe behaviors in the state at that time.

Working with ASD Children

During my tenure with the crisis team, I successfully taught parents, caregivers, and staff why the individual they loved or supported was engaging in their problem behaviors. The lessons included what families could do when the behavior happens, and teaching new skills to replace the behavior. I had a 100% success rate with my clients and prided myself in this.

The work I did with the crisis team doesn’t hold a candle to the toddler tantrums of my first child, Henry.

After reading the last sentence, I’m sure some of you are thinking, “what little monster is she raising?” I can tell you that’s not the case. Henry is a spirited, wonderful little boy who quizzes me on dinosaurs daily, loves ice cream (who doesn’t), snuggles for hours reading with me, and always dances like no one is watching. But Henry, like every other two year I know, has Big Emotions. These Big Emotions took me for a spin when they started.

Coping with Difficult Behavior

photo of mom and childLet’s back up for a second. When I did my work with the crisis team, what made me so successful? Applied Behavior Analysis (ABA) has this cool science that studies why behaviors occur. It’s broken down into four categories; behavior happens to gain access to attention, escape from..(fill in the blank), access to tangibles/activities, or automatic (physiological) consequences.

By consequences, I mean what follows a behavior. Say, for example, you’re busy making dinner and your child starts to yell or hit. You would probably stop cooking, scold your child, and move on. Your child is looking for your attention. Another example; you ask your child to come get dressed and they begin running and screaming through the house. Your child is trying to escape the demand. Run this recipe a few times over just about everything and you’ll start to see the patterns too. It’s eye-opening.

When I did my work with the crisis team and later at my own company (Instructional ABA Consultants), I used this science to customize treatments by using this type of analysis. I would teach what the client is trying to achieve through their problem behaviors, how not to reinforce (or reward) them, and how to teach new skills in place of the problem behaviors.

Difficult Behavior and Family

Back to my situation; so why couldn’t I do this with my darling boy Henry? I have honestly spent a solid six months asking that question and beating myself up over it. Naturally, I reached out to my ‘mom tribe’ for help.

I took to heart a lot of reminders from my ‘mom tribe,’ and read a wonderful book, “How to Stop Losing your Shit with your Kids.” When you are a parent and not a clinician you are emotionally attached to this little someone. You are also, almost all the time, running on fumes.

When I had a 100% success rate with the crisis team I always had a full night’s rest, fresh coffee, done a morning workout, and chosen my schedule for the day. I was rested, in the zone, and able to come in to provide our cool science, train. On top of all that, every day, like magic I got to leave! With my own children, I’ve spent the better part of two years feeling 100% responsible for their wellbeing. If I’m being truthful I’ve been on overdrive for no good reason other than beating myself up over “doing it right.” Sound familiar?

To change the dynamic at home I had to change my own behaviors and it started with self-care. It was impossible to objectively intervene during a toddler tantrum with my own tank so low. I needed to find little ways to start taking care of myself again and not feel guilty about it. I had to calm my nervous system down.

Finding A Balance

Now, while I’m still microwaving my coffee on any given day, I’m also noticing what it feels like to be stressed and taking action. I can’t say enough about the suggestions in the book I referenced above, as it walked me through many self-care steps. As mothers, we are still human and can’t expect ourselves to be “on,” at any given moment.

In an emergency, yes, we should absolutely be there, but those 15 minutes of quiet time while you meditate, listen to music, or nap? These short self-care breaks are not damaging your child, they are actually helping them because you are helping you. Moms need to give themselves more frequent passes on being themselves versus being “mom” all the time.

The feeling of being overly responsible for my children has changed now that I allocate a bit of time for myself. I also follow a new rule. When I’m feeling frustrated I pause, breathe, and do something recommended by “How to Stop Losing Your Shit with your Kids.” Henry and I do A LOT of down dog yoga poses. In treating myself better I’m able to step back and objectively look at Henry’s tantrums.

Who knew that helping my kids started with helping myself?

A good colleague of mine reminded me in the throes of motherhood that “ABA is always available to us.” Now that my tank is full“er” (remember I have two kids under two!) I can look to see what Henry is trying to achieve, help him use his words, be safe, and feel so much better about myself.

It’s in doing less that I am finally beginning to feel like I’m doing more. While my days aren’t perfect they’re getting better. Using science and self-care are my current jam for tolerating tantrums.

Xoxo,
Jessie